Friday, February 29, 2008
"He will sit as a refiner and purifier of silver."
This verse puzzled some women in a Bible study and they wondered what this statement meant about the character and nature of God.One of the women offered to find out the process of refining silver and get back to the group at their next Bible Study.
That week, the woman called a silversmith and made an appointment to watch him at work.She didn't mention anything about the reason for her interest beyond her curiosity about the process of refining silver.As she watched the silversmith, he held a piece of silver over the fire and let it heat up.He explained that in refining silver, one needed to hold the silver in the middle of the fire where the flames were hottest as to burn away all the impurities.
The woman thought about God holding us in such a hot spot; then she thought again about the verse that says: "He sits as a refiner and purifier of silver."She asked the silversmith if it was true that he had to sit there in front of the fire the whole time the silver was being refined.The man answered that yes, he not only had to sit there holding the silver, but he had to keep his eyes on the silver the entire time it was in the fire.If the silver was left a moment too long in the flames, it would be destroyed.The woman was silent for a moment.Then she asked the silversmith, "How do you know when the silver is fully refined?"He smiled at her and answered, "Oh, that's easy -- when I see my image in it"
If today you are feeling the heat of the fire, remember that God has his eye on you and will keep watching you until He sees His image in you.
Thursday, February 28, 2008
My heart aches when I see pregnant tummys,
My heart aches when I see healthy babies,
My heart aches because I cant nurse my baby,
My heart aches when I remember the empty feeling in my tummy,
My heart aches because my arms were empty for three weeks,
My heart aches when I remember the lonely nights at his bedside,
My heart aches that there was no homecoming with the new baby,
My heart aches because everything has changed,
My heart rejoices because he is alive,
My heart calms because he is recovering,
My heart celebrates because he is growing so well,
My heart sings when I rock him to sleep,
My heart melts when he smiles at me,
My heart is comforted when I lay him in his own bed,
My heart is glad that we are at home,
My heart is healing because everything has changed.
-----Jessica Pruitt 2008
Wednesday, February 27, 2008
Here is Alex after sweet potatoes.
This morning the nutritionist was here and said that our sweet little man is still gaining too quickly, he is almost 20 pounds now, so we get to cut out another feeding, which means that we don't, or I should say Adam doesn't have to get up to feed in the middle of the night. We were hoping for this because so many times Alex will be sleeping peacefully, and we disturb him either by hooking up the feed, or reflux from the feed. Sometime he sleeps right through and doesn't even know he has been fed, but usually we disrupt his sweet sleep. So tonight will be the first night we get to sleep all night long. We know Alex will make it because there have been many times we sleep through the alarm to feed him, and Alex could care less.
Tuesday, February 26, 2008
By Maureen K. Higgins
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well-worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world.
You are my "sisters." Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes. We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with heir diagnosis. We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed forthe trip.
But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses, and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world. But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
Monday, February 25, 2008
Saturday, February 23, 2008
Around 22 weeks a routine ultrasound found that there was a cyst on the umbilical cord. This news did not bother me too much, but I decided to go home and Google cysts on cords anyway. (bad idea) The information I read said that most of the time a cyst on the cord is related to some chromosomal abnormality, I was in tears, and full of fear. This is not what I wanted, I could not do this.Because the doctors wanted to monitor the blood flow to Alex, I had routine ultrasounds once a week , and in the last weeks, I had 3D ultrasounds twice a week. I also decided to have an amniocentesis just because I am a need to know kind of girl. Everything was normal! I was filled with joy, and couldn't wait to meet my baby boy. Why didnt they tell me this painful test doesnt detect every problem???? Deep down I knew that there was a problem, but I ignored that since the doctors told me that everything was fine.
On September 7, 2007 a scheduled c-section was to take place, this was my first c-section "the doctors didn't want the cyst which was the size of a baseball to pass the natural way, "in case of rupture" at 12:31 Alex was born, although it felt more like he was ripped from my body. He made one little squeak, then he was grunting, and he was fighting to breath. They immediately took him upstairs, I barely saw him, and had no chance to hold by precious baby boy.Once I had recovered from the c-section I went upstairs to see my son, he was crying, naked, and kept hitting his face on the oxygen hood. They said I couldn't hold him, his O2 was dropping fast, and he was soon on a vent. Not long after they put him on Nitric Oxide, and he was on an oscillator. this is a machine that while intibated makes his body shake. The doctor decided he should be flown to St.Louis because there was a good chance he would need to be on a heart lung bypass machine if he were to make it. He was truly fighting to live.
When the transport team wheeled Alex away from me, for the first time I felt the greatest sadness I have ever known, my heart was broken, and empty. I wept for my older boys who couldn't see their brother, I wept for my baby who had been taken from his warm safe home, now he couldn't find me, he was fighting to live. So as he flew to St.Louis, and the trasport team had him bagged and was breathing for him, I went home. Coming home that first time, and not having Alex in my arms as I walked through the door was one of the hardest parts of all this, tears would come down my face just passing his room, we had it ready for him everything was up and waiting. I had to close his door, and not look at his bed, and swing, the chair that I should be rocking him in just sitting there empty.
In St.Louis the doctors were very concerned for Alex, he had pulmonary hypertension, his heart rate was in the 190's, and his sats were in the 80's. His lungs wee filled with fluid. At 5:00am, 9:00 am, 1:00, and 9:00pm they would poke his heel to get a blood gas, which tests a lot of things, but the big number was his Co2, his was high, usually above 60, and into the 70's. Every few hours they would come in and x-ray him, that scared me because they would ask if I wanted to leave the room to avoid exposure, and he had to lay right under this big machine his little newborn body and be exposed. On the second day in St.Louis the power went off in the NICU, which also meant the oscillator stopped, the amchine that was keeping my son alive stopped. I panicked, screamed, cried. The nurse was right there, bagged him, and breathed for him, but there is something more scary seeing a human breath for your child than a machine.
Alex was on the oscillator for five days, then an angel walked into our lives. Dr.Sadiq who just happens to specialize in newborns with pulmonary hypertension, took Alex off the oscillator and put him on the vent, it was a success! Dr. Sadiq came in and checked on Alex every morning around 7:00. He didn't have to, he wasn't Alex's doctor. I will forever be grateful to Dr. Sadiq for watching out for my Alex. Alex continued to struggle to breath on his own and it was another 3 weeks before he could come off the vent, they tried 3 times to take him off, each time I had to watch him fight for every breath, I could see all his ribs as he would pull hard trying to get enough oxygen into his lungs, and each time I had to watch them insert the breathing tube back into his airway.
This was such a hard time for me, back home Noah was having his first days of kindergarten, and Joel his very first days of preschool. My whole life had been turned upside down. I needed to be there, and I needed to be with Alex.
Alex also had a malrotation that could have resulted in a twist or blockage of his intestines which could have resulted in him losing some or all of his intestine, that was corrected on September 28, It was a major surgery, and once again Dr. Sadiq made this surgery happen before the surgeon left the hospital for another job. We would have had to move to another hospital if Dr. Sadiq had not pushed for the surgery. At Cardinal Glennon they opened up a new NICU unit the day after Alex arrived, Alex had his own private room, and I could stay in it with a bed to sleep on 24/7, we would have lost all this if we would have had to go to another hospital.
After the surgery Alex came off the vent, and stayed off. We were in the hospital for another 3 weeks. A geneticist came to our room, looked Alex all over, very professionally, and with respect told me all the things that were physically wrong with Alex (it was like a bully on the playground) "his ears are malformed, his nose is beaked, his thumbs are angulated, he is hairy, his eyes are too far apart.He was very nice but, its hard to sit there while someone tells you what he says isn't "right" about your beautiful baby. I didnt see it, he looked perfect to me. Now I can look at people and see little imperfections that if they had enough of they would be classified as having a syndrome, the fact is none of us are perfect. He left the room, did some research, and came back with a Rubinstein Taybi Syndrome diagnosis. I ignored him, first of all the first time you hear that, it sounds like some foreign language, I waited for him to leave, and told myself he was fine, afterall he had three genetic tests that all came back normal. It took me months to come to terms with what that doctor had said, I did some research, and even met a wonderful mom and her son with the same syndrome, that is when I knew we would be ok, meeting her is what turned all this around for me.
I have been wrestling with God ever since, but I'm starting to understand everything. God put us in St.Louis so we could have all those wonderful doctors, so I could be with Alex at all times, so he could have the very best care. So I could meet Myssie, and see that our little sweeties are ok, they are not a syndrome, they are real boys and girls. He brought the best therapists to us, Cheri you are a friend, you are in fact family! I have met strangers on line that have gone through much greater things, and have a faith, a strength that I hope to have one day Kenzie, I havent know you long, but I think we share something in all this, I know it wasn't an accident that I stumbled upon your page.
God didn't leave me, there were nights in the NICU, I was alone, my baby was dying, and I couldn't find God. BUT, He never left, He was putting everything into place, and he sat right there by me on the couch when no one else was around. He stood by Alex when I had to go home.
I cant say that I want this, no one wants this for their child, but I know I can do this. I know Alex is going to be fine, and he is going to teach everyone he meets whatever it is that they need to learn about life. Alex will be a life changer for everyone who meets him, and loves him.
Friday, February 22, 2008
Pray for the Bolte's today Howard, Kristy, Luke, and Ben, and their sweet baby happy. Have mercy on them today God.
Thursday, February 21, 2008
his nerf gun on Monday. That was unsuccessful, but tonight Daddy
pulled it out. Noah is proud that it is his fifth tooth, and right in
front center. He is getting so big:(
They got the iv started in one try, thanks God for getting the transport nurse to do it!
Adam and I had our valentines date in the Cardinal Glennon cafe, that is where we spend time together these days!
Alex was pretty grumpy for about an hour after everything was over, but we were able to leave about 3o minutes after he woke up, and he slept most of the way home.
He is a little gaggy for some reason so Im afraid to feed him too much. I think he just wants to lay in his own bed and recover, I think he has a bit of a hang over.
Today went really good, I am so greatful to be home, and have one less appointment on my dry erase board.
Thank you to everyone for praying for us today, to freinds and family, and to all of you out there that we havent met, but are watching our sweet Alex progress:)
Wednesday, February 20, 2008
I will let you know how it goes.
Tuesday, February 19, 2008
If I were on the otherside of this blog I would worry about my weight, and what people thought of me.
On the otherside I would complain about not having time for me, complain about my house, and being stuck in it all day, complain about what I didnt have.
If I were on the other side of this blog I would say " she sure has been through a lot", and quietly be glad it wasnt happening to me. But.............
If I were on the otherside of this blog, I wouldnt know sacrifice, I wouldnt know unconditional love, and what it really means to give yourself.
I wouldnt remember to appreciate the little things, appreciate my kids being loud, thank God they can talk.
Appriciate them running through the house and into things, thank God they can run.
Appreciate whining, Thank God they can express themselves.
Appreciate the mess they make when they eat, thank God they can put food in their mouths.
On the otherside of this blog my older boys wouldnt get to see and experience unconditonal love at its best.
On the otherside of this blog, I was selfish and shallow, on the other side of this blog I wouldnt have grown, I wouldnt know what I know now.
I wouldnt have Alex, on this side I have a gift.
I am proud to be on this side, I dont need to be reminded anymore about what is really important, I am thankful to be on this side of the blog.-Jessica Pruitt 2008
Monday, February 18, 2008
Alex does quite well holding himself up on his tummy on the therapy ball. When he is flat on the floor he just lays there and screams, but on his ball he is a happy camper, and does a very good job! Sorry you can't see the ball in the picture.
He has gotten so much stronger in just a week, I am excited to see what is coming.
Sunday, February 17, 2008
Saturday, February 16, 2008
Alex has been tasting food for five days now, and is really doing well with it. He seems to be swallowing it well, and loves to suck on his hands after I remove the spoon. Right now we are on apples, he likes them just as much as the bananas, I think we will have a big eater sooner than we realize!
Friday, February 15, 2008
“As a child of God, my attitude toward sorrow and difficulty should not be to ask that they be prevented, but to ask that God protect me so that I may remain what He created me to be, in spite of all my fires of sorrow. Our Lord received Himself, accepting His position and realizing His purpose, in the midst of the fire of sorrow. He was saved not from the hour, but out of the hour. We say that there ought to be no sorrow, but there is sorrow, and we have to accept and receive ourselves in its fires. If we try to evade sorrow, refusing to deal with it, we are foolish. Sorrow is one of the biggest facts in life, and there in no use in saying it should not be. Sin, sorrow, and suffering are, and it is not for us to say that God has made a mistake in allowing them. Sorrow removes a great deal of a person’s shallowness, but it does not always make that person better. Suffering either gives me to myself or it destroys me. You cannot find or receive yourself through success, because you lose your head over pride. And you cannot receive yourself through the monotony of your daily life, because you give in to complaining. The only way to find yourself is in the fires of sorrow. Why it should be that way is immaterial. The fact is that it is true in the Scriptures and in human experience. You can always recognize who has been through the fires of sorrow and received himself, and you can always go to him in a time of trouble and he has plenty of time for you. But if a person has not been through the fires of sorrow, he may turn you away. If you will receive yourself in the fires of sorrow, God will make you nourishment for other people....”
I hope to someday be nourishment for someone else.
Thanks Cheri you are one of those people for me.
Here are some pictures of Alex watching baby Einstein, our PT said that Alex needs to strengthen his neck by looking up and to the left, and the best way I can get him to do that is by watching tv sideways. He loves watching Baby Einstein movies, so did big brother Noah, but Joel was too busy, and didnt have time to sit and watch too long.
Thursday, February 14, 2008
Wednesday, February 13, 2008
A few weeks before we were discharged Alex got a urinary tract infection, and they were considering putting another picc line to give him his medicine, I stood there and wept in front of the doctor because I knew what this meant. I was so upset that the nurse called my husband and told him to come be with me. They decided to try an antibiotic that they could give him by injection instead.I have seen to much, and know just enough to send me into a panic. The night went well, and no fever at 4:00 am, we will see how the day goes.
Tuesday, February 12, 2008
our session with Cheri went so well today, probably our best yet. He laughed with cheri, the most I have ever heard him laugh. He also is tolerating things near and in his mouth really well. this is a big change for him. After his pnemonia and all the suctioning they did he began to hate things near his mouth.
I am so proud of him, and ready for this new step.
Im not sure we should have cancelled the MRI, now we may not get in until April. The ice started falling just as we were leaving St.Louis. Someone tell me the roads were terrible, so it makes sense to have cancelled yesterday. Myssie?????
We are hoping for a February appointment for the MRI, we will know on Thursday when it will be.
Monday, February 11, 2008
Sunday, February 10, 2008
We should be enjoying our new family, but instead we are overwhelmed and tired. I should take my kids to school, and be there to pick them up. Alex should be getting ready to crawl and sit up, I should be nursing him. I should know more about what my kids are doing in school. All I have wanted to do is be a mom, I feel so out of touch with my older boys, I miss them.
Saturday, February 9, 2008
It seems like every few weeks someone has some germ in our house.
I am anxious to get Alex out, and show him the world. Take him to the park, for a walk. So far all he know is his house and a selection of doctor offices and hospitals. Its sad when you are excited to stand in the produce section just for the expereince. Neither one of us has been to the grocery store since he was born. I am ready to buy some bananas!
Thursday, February 7, 2008
On my drives to and from the NICU I would play music, sing along, it helped my heart.
After Alex was in the hospital with pnemonia over Thanksgiving things changed for me, I questioned God, and everyone around me. That was a harder hospital stay than the 6 weeks in the NICU. I was able to praise Him in the storm in St.Louis. I would force myself to praise Him when Alex's O2 wouldnt stay up, when he struggled for breath and you could see every rib on his side. When I watched the doctor stick the breathing tube into his airway. When they x-rayed his little body every three hours. When they pricked his heel at 1:00, 5:00, and 9:00 around the clock for a blood gas. When the geneticist told me he had a syndrome. When he struggled to learn how to suck. When he couldnt have milk in his tummy for three weeks. When I couldnt touch or hold him for two weeks. I made myself praise Him.
After we came home things were going good, and my older boys were happy to have me back, then one month to the day that we came home from St.Louis we were admitted to St.Johns with pnemonia, I was devistated, I felt abandoned by everyone especially God. I have been angry. I have even allowed myself to become numb, it feels better than the anger.
Like the song that is playing says "This hand is bitterness we want to taste it and let the hatred numb our sorrow" but then it says "the wise hand opens slowly to lillies of the valley and tomorrow." I am hopefull that tomorrow comes soon for me. While I wait, I see that I am slowly enjoying the todays, and my music helps.
Wednesday, February 6, 2008
On December 19 we had a big day in St.Louis, full of doctor appointments. As we were talking with our orthopedic doctor I jokingly asked if he knew anyone else that had a child with RTS, "jokingly because it is so rare", and he answered yes. I was so excited that someone else was near I again jokingly asked if he could casually drop their name and number on the floor on his way out. Of course he could not, and left after the appointment was over, about thirty minutes later he came back in and said there is someone here I would like you to meet. It was Will and his mom, who just happened to be at the same clinic on the same day. I want you all to understand the chances of that happening with RTS is very slim.
Walking into that room and meeting Will and his mom was so important for me, first of all having someone else that knew everything that I was feeling, and to see how well he was doing, and she was doing. He was into everything in the doctors office, a mom with a typical child might have been irritated with a child being into everything and being so busy, but this was important for me to see, he was being a little boy, curious, and ready to discover! We are so honored to know this family, Will is doing so good, and is such an encouragement to me, I cant wait for Will and Alex to meet, and play together. So take a peek at Will's site, and the other beautiful sweeties on their blogs so you can see how wonderful all these children are.
They may not be typical, or meet up to the worlds standard of normal, but they are beautiful, they are pure, and the joy they bring into the worlds of everyone who meets them, is something we could all take a lesson from!
Tuesday, February 5, 2008
Monday, February 4, 2008
After all the doctors instructed us to not take him anywhere, to get flu shots, and to wash our hands before touching him, basically we brought the NICU rules home with us.
We have slightly relaxed and Noah must be able to tell because he wants to play with his baby brother.
When Alex smiles Noah laughs, his smile is contageous, and he has been smiling since he was inside me:)
Saturday, February 2, 2008
Come on little man you can do it!!!!
Alex is getting his first tooth!
Your chance of having a second child with RTS is quite low and represents the chance that multiple egg cells or multiple sperm cells harbor the gene change (VERY unlikely). Your other children ARE NOT at increased risk to have children with RTS. RTS is fully penetrant which means if you have the gene mutation, you show manifestations of the disorder (eg. there are no "silent carriers" of RTS).
- nothing you or your childs father did or ate or were exposed to, none of the drugs you did in college, caused this to happen.
When DNA is replicated, millions of base pairs are copied and sometimes mistakes are made.
The cell has an editing system that picks up the vast majority of these mistakes but sometimes things are missed. There is no blame to lay, this was an out of the blue thing that happened and there was nothing you did to cause it and nothing you could have done to prevent it.
The chances of anyone having a child with RTS are about one in every 200,000. Anyone could have a child with RTS.